Discontinuation Of Deseril (Page 3)

I have been taking Methysergide (Deseril) for 14 years as a preventative for migraines. It is the ONLY drug which works for me and I am devastated by the news that it has been discontinued. I am keen to try to find a source for some even if it is only to get me over the next 8-9 months when I still have to have three weekly infusions of Herceptin for the treatment of breast cancer. Herceptin gives me more headaches as one of its side effects so I really need my Deserils! Can any one help or if not is anyone in the same boat? Maybe not the Herceptin bit!

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Along with the rest of you I also suffer from chronic migraines and find that Deseril is the only preventative that helps. I found out from Link Parmaceuticals in Australia this week that the active ingredient that is unique to Deseril is no longer available worldwide as the manufacturer has ceased production of it and has no plans to restart. As to why, I can only assume that it is not financially viable.
Whilst weaning off the Deseril with my final packet I have introduced a combination of Feverfew/Vit B2/magnesium to try and ease the withdrawal off the Deseril. Hopefully it will help as it is the best combination naturopaths can offer.
On other forums I have noted that medicinal marijuana is used by many esp in the US where it is legal in some States as a preventative. I have just come across this and intend to research it further and let you all know how I go. Good luck to you all in finding something that will help you get through this terrible time for so many of us.

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After 20+ years on Sansert/Deseril (Methysergide) as treatment for complex, confusional migraine, I was very worried that my quality of life was going to go to right out the window when I learned that Deseril was discontinued. I am a patient of Dr. Raskin's and he transitioned me directly to Methylergonovine . This was in August of 2013 and I have not experienced a migraine since then. For me, this is amazing and wonderful, as, even on Deseril, I had migraine attacks - as frequently as once a week.

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Tia, how much Deseril were you taking before, and how were you taking it? And how much Methylergonovine are you taking now and how are you taking it?

Thanks,

Chance

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Is dr Raskin an Australian doctor? I have asked a few about methergine but had no feedback from them. I do not think it is available here. I am on a mix of periactin and gabapentin. So far I have been able to halve my deseril intake although I have had the odd migraine. I too have written to the drug companies to no avail but I urge you all to write the more pressure the better.

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I was taking a low dosage. 2MG of Sansert/Deseril (two brand names for same meds; first Sansert was discontinued and now Deseril. I had been started on a higher dosage, but reduced to see what little I could get away with. I'm now taking 6MG of the new meds, but, again, once it's had a chance to prove itself thoroughly, I'll cut back to see how low I can go.

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Dr. Raskin is the head of the University of California, San Francisco Neurology Department, here in San Francisco, CA, USA.

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Correction, I'm now taking 1.2 MG, as the 6 pills are 0.2 MG each.

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I have been on Deseril for about 20 years. It is the only Migraine preventative that works for me. The supplier in Australia tells my chemist that it is now not being manufactured any more. I have 2 weeks supply left. I have been trying to reduce my dosage but that only triggers cluster migraines. My chemist is searching for me. I really don't know what to do as this is the only medication that has been successfull for me without any side effects. This might sound crazy but my supply will last to New Years day...I am enjoying every moment till then as life without Deseril is unthinkable...I have been through it all before. Looking at alternatives with my physician. I am sure those of you in the same boat realise where I am coming from!

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Has anyone tried the Migraine Support Formula distributed by Migraine Treatment Group, advertised on this web chat. I see it is America, maybe some of our fellow American sufferers can advise. It looks interesting, some of the ingredients listed I have been aware of. My husband takes Mega B already. Update on his progress of weaning off Deseril:- He is now not feeling the side effects of Topomax after his nasty experience with that & since stopping taking it. Has reduced down from 4 to 2 Deseril surprisingly well. I am thinking this may be possible as he has been on 100mg Endep daily for many years as well as Deseril. Apparently Endep is used as a migraine treatment & to treat chronic pain as well as an antidepressant. My sister in law was prescribed Endep for chronic & extremely painful bladder spasms & intense pain, and they have worked extremely well for her. Reducing to 1 a day tonight will see how this effects him now, fingers crossed. Have a chat to your doctors about Endep.

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I ordered the "Migraine support formula" advertised here but the company neither supplied the product nor replied to my emails. Maybe because I am in Australia. However the site does give the whole formula and I have been able to replicate the tablets by combining a couple of products from the vitamin store. I believe it helps greatly. When I am on my month off Deseril I take Prenisolone tablets, starting with 50 mg daily and reducing gradually to 10 mg. I have no problems during this month. Doctor tells me this is not a long term solution, but I am going to try to see how low I can go without Migraines occurring.

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Hello all.. I am a 15 year user of Sansert for periodic cluster headaches. I have had no ill effects, but only take the medications for 8 weeks every few years when my attacks strike. I have a supply for one more series in my possession but am hoping to find an alternative. When a series hits I take the Sansert plus cyproheptadine and verapamil. The mix has worked wonders and I hope to see if substituting Methergine for the sansert will produce similar results

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Bruce im in the same boat as you I have tried other migraine preventers but non work Deseril has changed my life I used to suffer chronic cluster headaches every week then finding Deseril WOW what a life I have.
However Bruce my supply will run out in march so I treasure every day I have left.
Now its back to the doc,s and we will start searching again not looking forward to this.

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Hi everyone, my husband is now out of deseril and is going a lot better than we thought he would. He has suffered a couple of migraines and has been feeling a bit of uncomfortableness in his head - as in wooziness & heavy head like if you had a hangover. We think this maybe withdrawal symptoms from the Deseril. I would urge you all to try Endep as I really do feel this is what is keeping my husbands headaches at a minimum, before Deseril he had no quality of life.

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I stumbled on a long thread of headache sufferers in the Netherlands who are losing their life because they have lost Deseril. There are thousands of us in every country in the world!

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Methylergonovine has now kept me completely migraine free for more than four months. I transitioned directly from Deseril (to which I'd transitioned from Sansert years before when it was discontinued). It's out-performing Deseril and Sansert for me, so there is hope out there for alternatives.

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That's great to hear. Unfortunately I had no success w/ Methylergonovine aka Methergine. It completely ripped a hole in my stomach. Abdominal pain with that stuff was as bad as my worst headache pain. It also gave me horrible diarrhea.

I'm continuing my Deseril taper. Will be down to 1mg/day tomorrow. Having daily migraines, but intensity hasn't been terrible.

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Where or from who can I find Methylergonovine. I can't seem to find a supplier in Australia. My specialist not helpful, just said it is not useful with Migraine, forget it!

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Methylergonovine doesn't appear to be available in Australia. There is a similar medicine (primary use also in obstetrics) called Ergometrine. Try looking into that.

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Already asked about this with my husbands doctor here in Australia, you are right it is only used in obstetrics and only available as an injection. Doctor said NO.
Still researching.

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After finishing my supply of Deserils I was having migraines every day and took to the Internet to try to find something to help. I read about 5HTP which works on Serotonin levels in your brain. It is a herbal supplement usually taken for depression but can be helpful for migraines too as a prophylactic. At first I was sceptical because I have tried all the herbal remedies in the past to no avail. However very good reports were being written online including one by Stephen Fry. So I bought some and started to take them. I started on 400 milligrams a day and found that to be enough. I've not had a migraine since , a week ago! It seems too good to be true and I am so happy about it that wanted to share it with you. I was nervous of trying it because you can't take any of the Triptan drugs while on it. But my desperation was such that I tried it anyway and haven't neede to take a Zomig. I have had a few minor headaches which respond to painkillers and I suppose it is early days to claim a real success. But perhaps if I tried 500 or even 600 mg a day I wouldn't even have any headaches. I would love others on this thread to give them arty and report back. I will let you know if they are still working in a few week's
time . For now they are my miracle giving me life back after the misery of no Deserils.

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I have been taking Sansert, later called Deseril in the U.K., and had almost none of the chronic daily migraines I had b...

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